Negative Biopsy But Chronic Inflammation

[susanm]

I know I don't react well to gluten. My antigliadins were high. My biopsy was negative, though it showed chronic inflammation. What does this mean?

I had a 2 bites of cake the other day and got crampy. Why wouldn't the biopsy show something? He said he took the biopsy from a few areas.

[ShayFL]

A "few" areas could mean 2. Six or more is better. Maybe you are at the beginning stage with only inflammation. This is good that you caught it early. You should request genetic testing. If you have the Celiac genes and with POS blood and inflammation, you can either stop eating gluten and get well. OR keep eating it until you get sick enough to show damage to your villi. Believe it or not, this is exactly what most doctors will have you do. They will tell you that you are fine and to keep eating gluten. Then years later.....you get dx properly.

[happygirl]

Couple things:

You may not have Celiac, but a non Celiac gluten problem. Open Original Shared Link

You may have Celiac, but the biopsy didn't pick up on it. Open Original Shared Link

Open Original Shared Link

You may have something else that is causing the inflammation, and have a separate gluten issue.

Lots of options, unfortunately.

If your goal is to determine if gluten is causing your overt symptoms, than a gluten free diet 'trial' may be worth it.

[susanm]

Hi happygirl, I couldn't see the link you sent me, but I did some of my own research. I probably have non-celiac gluten sensitivity (NCGS).

I just needed some justification to continue my gluten-free diet and feeling much healthier with it. I know I don't really have to justify it to anyone but myself, but it is a major lifestyle change. I mean, why would I have chronic inflammation? I don't have heartburn or H. pylori or Giardia. What I do know is that I feel really lousy when I have pasta or bread, so I'll just go with that. Also, my friend said that my complexion seemed a lot better.

Thanks

[nora-n]

I think you might be celiac, but that the method of diagnosis is close to medieval.

LIke in the old days, they would not diagnose you with flattened villi, only total villous atrophy would do.

Now they are moving more towards the inflammation thing, that you are celiac when there are more than let's say 20 leucocytes per 100 cells or something like that. Check all the blog notes Dr. Lewey has written on that: www.thefooddoc.com .

Some places can diagnose you with inflammation. aldo google the marsh scale.

nora

[happygirl]

Hi happygirl, I couldn't see the link you sent me, but I did some of my own research. I probably have non-celiac gluten sensitivity (NCGS).

Which of the three links were you having trouble accessing?

[TracyB]

I know I don't react well to gluten. My antigliadins were high. My biopsy was negative, though it showed chronic inflammation. What does this mean?

I had a 2 bites of cake the other day and got crampy. Why wouldn't the biopsy show something? He said he took the biopsy from a few areas.

Hi - I saw something (I think last night) on the tv show called The Doctors. They were demonstrating the pill camera that a patient can swallow - anyway, there was a woman on that had been very ill for 7 years - down to 70 lbs. at her worst - she was finally diagnosed with Crohns Disease - but from the pictures (showed a healthy intestine vs her intestine) there was such an obvious difference. However, I believe they did use the terminology "chronic Inflammation". Apparently, she was hard to diagnose because the scope that is used can sometimes not reach the area they need to view - thus the little pill camera they used to diagnose her.

Just a thought - I think with Crohns there is a lot of pain as a major symptom.

TracyB

[susanm]

Which of the three links were you having trouble accessing?

I'm having trouble viewing the first link you provided. Ohh, there's so much to think about. The more I read, the more confused I am. I'll just stick with gluten-free to be safe.

[happygirl]

here's the text:

Open Original Shared Link

Celiac Disease vs. Gluten Sensitivity

By Tricia Thompson, MS, RD, the gluten free dietitian

"When I first started working in this field, the term gluten sensitivity was used interchangeably with the term celiac disease they basically meant the same thing.

Times have changed. We are now learning that there is a group of people who do not have celiac disease and do not have an allergy to wheat but nonetheless can not tolerate gluten. This condition is being called gluten sensitivity.

Very little research has been conducted on gluten sensitivity. However, a study abstract on this condition was recently presented at a medical conference known as Digestive Disease Week. One of the study authors was Alessio Fasano, M.D., Medical Director of The University of Maryland Center for Celiac Research.

Dr. Fasano was gracious enough to answer some questions about gluten sensitivity.

The term non-celiac gluten sensitivity is being used with more frequency. Can you please define what it is and how it differs from celiac disease?

Gluten sensitivity is a non-allergic, non-autoimmune reaction to gluten that can cause symptoms similar to those experienced by people with celiac disease.

In your medical practice, how do you determine if a patient has non-celiac gluten sensitivity?

Because gluten sensitivity is not a food allergy (like wheat allergy), or an autoimmune process secondary to exposure to gluten (like celiac disease), the diagnosis is based on exclusion criteria. In other words, people that experience symptoms that are suspected as being related to gluten exposure will be tested for wheat allergy and celiac disease. If they are negative for both, gluten sensitivity is considered. The diagnosis will be confirmed if symptoms resolve following the embracement of a gluten free diet.

An abstract was presented at Digestive Disease Week that you co-authored entitled, "Role of the innate immune system in the pathogenesis of gluten sensitivity: Preliminary study." The abstract suggests that celiac disease and gluten sensitivity may be two separate diseases. Can you please explain?

As mentioned above, celiac disease is a true autoimmune disease (like type 1 diabetes and multiple sclerosis) in which both innate and adaptive immunity are involved. Conversely, gluten sensitivity is a non-autoimmune reaction to gluten in which only the innate immune system is involved.

In an article you wrote about Digestive Disease Week for Medscape Gastroenterology you state that gluten sensitivity "may be related to activation of the innate immune system without the involvement of the adaptive immune system." Can you please explain further, including what is meant by innate immune system and adaptive immune system?

The innate immune system is the most ancestral form of defense we have against "invaders," while the adaptive immune system is a more recent branch of our immune system. Once our body comes in contact with a substance from the environment that may represent a signal of danger, the innate immune system reacts immediately to try to eliminate the "attacker."

At the same time, the adaptive immune system will intervene with a more sophisticated, long process, during which the attacker is studied, its conformation evaluated, and a "customized response" to that particular molecule is engineered (i.e. specific antibodies). Further, the adaptive immune system will save this information as immune response memory, so that at the next encounter there is no need to re-do the job.

In autoimmune diseases, like celiac disease, there is a coordinate response between innate and adaptive immune system, a response that ends up in the wrong direction (i.e.; attacking its own body rather than the "invader"). In gluten sensitivity, there is only an innate immune response, since the adaptive immune system seems not involved.

Thank you Dr. Fasano!

It is important to remember that regardless of whether you have celiac disease or non-celiac gluten sensitivity the treatment is the same a strict gluten-free diet."

[susanm]

Thank you for printing that for me. I think my adaptive immune system is at work because I also have hypothyroidism and Addison's disease, two autoimmune diseases. I know what he's talking about. Hayfever is probably an innate immune response. However, with my autoimmune diseases, the chronic inflammatory changes, and high antigliadin response on blood test (although I guess that could be innate too, I don't know), I would think that would be more celiac.

I'm not sure I'll ever really know. I'll just go gluten-free and maybe one day they will have enough research to really understand this thing.